Re: Questions from a new ablation candidate

[Guest guest]

In a message dated 8/16/04 10:22:05 AM Eastern Daylight Time,

kstept@... writes:

> I¹ve lost interest in just about

> everything that I ever liked to do. I¹m so tired of being tired.

>

Kathy,

Here's a good way to bring your EP into the running and to also let him down

regarding ablations.

First, let him know you are a member of this group. Our size and scope of

information as well.

That you have direct access to Dr. Natale at the Cleveland Clinic. The most

accopmplished

EP in AF ablations and research and several others.

Here's where you have to seperate yourself from your emotions and sense of

fair play.

The only person who's going to put wires and probes into my heart, is the

best I can find.

Dr. Natale is one for sure. What does your EP bring to the plate? Ask him.

What can you do that Dr. Natale can't do? Are you as accomplished as Dr. Natale?

Make him work for you. If he doesn't pass the test. Go elsewhere. Keep us

informed.

Rich O

[Guest guest]

In a message dated 8/16/04 10:22:05 AM Eastern Daylight Time,

kstept@... writes:

> I¹ve lost interest in just about

> everything that I ever liked to do. I¹m so tired of being tired.

>

Kathy,

Here's a good way to bring your EP into the running and to also let him down

regarding ablations.

First, let him know you are a member of this group. Our size and scope of

information as well.

That you have direct access to Dr. Natale at the Cleveland Clinic. The most

accopmplished

EP in AF ablations and research and several others.

Here's where you have to seperate yourself from your emotions and sense of

fair play.

The only person who's going to put wires and probes into my heart, is the

best I can find.

Dr. Natale is one for sure. What does your EP bring to the plate? Ask him.

What can you do that Dr. Natale can't do? Are you as accomplished as Dr. Natale?

Make him work for you. If he doesn't pass the test. Go elsewhere. Keep us

informed.

Rich O

[Guest guest]

HI Kathleen,

Sorry to hear about the struggle with your life and aphib. I know

it so very well. 20+ years to be exact.

Three weeks ago I had a PVA/flutter ablation and was feeling great

until last night when I rebounded into a full blown aphib episode

that continues on now after 15 hours. They say to expect this kind

of thing untill the scars heal. But right now I feel pretty

depressed about it. It feels like old times. Heart pounding out of

control and just sitting around waiting for it to go into NSR so

that I can resume my life.

The psychological profile of this condition is as you describe.

Eventually you question everything in your life as being a trigger.

I stopped doing and eating everything. That's when I made the

decision for the ablation. Also it was happening every day...12-

20hrs. Too much.

Right now my career is on hold hoping that this ablation works. My

doctor was not one of the world famous doctors but may be someday.

I feel very confident in him and still do. Time will tell.

Hope this information is helpful to you. If you like stay in touch

and I will update you on my outcome.

Blessings,

[Guest guest]

HI Kathleen,

Sorry to hear about the struggle with your life and aphib. I know

it so very well. 20+ years to be exact.

Three weeks ago I had a PVA/flutter ablation and was feeling great

until last night when I rebounded into a full blown aphib episode

that continues on now after 15 hours. They say to expect this kind

of thing untill the scars heal. But right now I feel pretty

depressed about it. It feels like old times. Heart pounding out of

control and just sitting around waiting for it to go into NSR so

that I can resume my life.

The psychological profile of this condition is as you describe.

Eventually you question everything in your life as being a trigger.

I stopped doing and eating everything. That's when I made the

decision for the ablation. Also it was happening every day...12-

20hrs. Too much.

Right now my career is on hold hoping that this ablation works. My

doctor was not one of the world famous doctors but may be someday.

I feel very confident in him and still do. Time will tell.

Hope this information is helpful to you. If you like stay in touch

and I will update you on my outcome.

Blessings,

[Guest guest]

HI Kathleen,

Sorry to hear about the struggle with your life and aphib. I know

it so very well. 20+ years to be exact.

Three weeks ago I had a PVA/flutter ablation and was feeling great

until last night when I rebounded into a full blown aphib episode

that continues on now after 15 hours. They say to expect this kind

of thing untill the scars heal. But right now I feel pretty

depressed about it. It feels like old times. Heart pounding out of

control and just sitting around waiting for it to go into NSR so

that I can resume my life.

The psychological profile of this condition is as you describe.

Eventually you question everything in your life as being a trigger.

I stopped doing and eating everything. That's when I made the

decision for the ablation. Also it was happening every day...12-

20hrs. Too much.

Right now my career is on hold hoping that this ablation works. My

doctor was not one of the world famous doctors but may be someday.

I feel very confident in him and still do. Time will tell.

Hope this information is helpful to you. If you like stay in touch

and I will update you on my outcome.

Blessings,

[Guest guest]

As always, your milleage may vary, but here is where I'm coming from. I've

talked sometimes about the three kinds of AFibbers. The first tries to find

relief through 'natural means' -- avoiding triggers, adjusting diet, adjusting

posture and so on. The second tries to medicate the condition. The third wants

a mechanical solution. All three want solutions, but they develop different

mindsets.

I didn't ever have much patience for the natural route. When there's as much

ambiguity as there is with this condition, those solutions all felt like

thrashing about. I've spent five years on the medical route. The dread

amiodarone (in combination with toporol) is the only thing that has any effect

on me and that effect is tenuous. The probability and nastiness of the side

effects that go with that regimen -- and the fact that it only partly resolves

the problem -- has been enough to move me firmly into the ranks of the

mechanics. ly, it sounds like you're being pulled there, kicking and

screaming.

I found it hard to wrap my head around two concepts as I got there. First, as

we all know --it's our mantra-- " Fib won't kill you. " So why am I going to let

somebody poke around in my heart? Part of it refers to the second concept, but

an even bigger part refers to the unspoken part of the mantra. " It won't kill

you, but there are times when you aren't sure that's a good thing. " Being sick

and tired of being sick and tired is a very good motivation to do something

about it. The second concept is that ablation takes place in your heart, but it

isn't 'heart surgery' as we subjectively relate to that term. It's not like a

bypass. You're not opened up. They're not spreading ribs. I could accept that

intellectually, but I needed to accept it in my gut before I was ready to move

into mechanic mode. I've done that, and now I'm waiting for my turn on the

table.

Now comes the heresy. Dr. Natale is a very successful electrophysiologist. And

he's doing a tremendous job in bringing attention to this condition and its

treatments. He appears to be very very good. But, in my opinion, he's even

better at something else than he is at medicine. He is a great marketer. The

whole Cleveland Clinic has done a masterful job of marketing. Let me emphasize

--- THIS IS NOT A BAD THING. Both in terms of education and of results, they've

made it work. I think that there's a real danger in saying that there are three

first rate ablators -- two in Europe and Dr. Natale -- and going to anyone else

is settling for second best. Find out about your local person's success rate.

If you can, talk to some folks who have used him. His success rate sounds

similar to that of most EPs. I'd say go with what you're comfortable with, but

don't let your comfort level be dictated by websites or bedside manor.

Good luck, and as I said at the top, this is just my $.02.

Kathleen Stept wrote:

He said that I am a candidate for ablation

at this point, since the drugs that have been tried haven¹t much affected my

afib and they produce side effects. ...snip...I was not ready on Friday to make

a decision to schedule an ablation. I hadn¹t been expecting the EP to recommend

ablation so soon, so I wasn¹t prepared to ask any questions about his approach

or track record. (He

mentioned an 80% success rate, the risks of surgery, and the possibility

that it won¹t make me feel any better.) In fact, I am rather flummoxed. I

have heard so much about Dr. Natale on this board, but how can I tell my EP

that I would rather have an ablation done by someone with more recognition?

(I¹m not sure that it¹s even fair to do so.) ...snip... I have mixed feelings

about the recommendation for ablation. I wonder if my EP gave up on drug

therapy too soon, yet I don¹t seem to do well on the drugs I¹ve been on.

Magnesium makes me sick and Diltiazem and Dofetilde make me feel tired and

light-headed. Doing anything feels like a big effort. I don¹t know whether

it¹s the drugs or the afib that causes this. (Or maybe depression.) ...snip...

I¹m

feeling tired, discouraged and scared. I¹ve lost interest in just about

everything that I ever liked to do. I¹m so tired of being tired.

Bill Manson

" When [] put on a uniform, something happened to him. He turned

into Manson's cousin, Manson. " -- Ken Kaiser

[Guest guest]

As always, your milleage may vary, but here is where I'm coming from. I've

talked sometimes about the three kinds of AFibbers. The first tries to find

relief through 'natural means' -- avoiding triggers, adjusting diet, adjusting

posture and so on. The second tries to medicate the condition. The third wants

a mechanical solution. All three want solutions, but they develop different

mindsets.

I didn't ever have much patience for the natural route. When there's as much

ambiguity as there is with this condition, those solutions all felt like

thrashing about. I've spent five years on the medical route. The dread

amiodarone (in combination with toporol) is the only thing that has any effect

on me and that effect is tenuous. The probability and nastiness of the side

effects that go with that regimen -- and the fact that it only partly resolves

the problem -- has been enough to move me firmly into the ranks of the

mechanics. ly, it sounds like you're being pulled there, kicking and

screaming.

I found it hard to wrap my head around two concepts as I got there. First, as

we all know --it's our mantra-- " Fib won't kill you. " So why am I going to let

somebody poke around in my heart? Part of it refers to the second concept, but

an even bigger part refers to the unspoken part of the mantra. " It won't kill

you, but there are times when you aren't sure that's a good thing. " Being sick

and tired of being sick and tired is a very good motivation to do something

about it. The second concept is that ablation takes place in your heart, but it

isn't 'heart surgery' as we subjectively relate to that term. It's not like a

bypass. You're not opened up. They're not spreading ribs. I could accept that

intellectually, but I needed to accept it in my gut before I was ready to move

into mechanic mode. I've done that, and now I'm waiting for my turn on the

table.

Now comes the heresy. Dr. Natale is a very successful electrophysiologist. And

he's doing a tremendous job in bringing attention to this condition and its

treatments. He appears to be very very good. But, in my opinion, he's even

better at something else than he is at medicine. He is a great marketer. The

whole Cleveland Clinic has done a masterful job of marketing. Let me emphasize

--- THIS IS NOT A BAD THING. Both in terms of education and of results, they've

made it work. I think that there's a real danger in saying that there are three

first rate ablators -- two in Europe and Dr. Natale -- and going to anyone else

is settling for second best. Find out about your local person's success rate.

If you can, talk to some folks who have used him. His success rate sounds

similar to that of most EPs. I'd say go with what you're comfortable with, but

don't let your comfort level be dictated by websites or bedside manor.

Good luck, and as I said at the top, this is just my $.02.

Kathleen Stept wrote:

He said that I am a candidate for ablation

at this point, since the drugs that have been tried haven¹t much affected my

afib and they produce side effects. ...snip...I was not ready on Friday to make

a decision to schedule an ablation. I hadn¹t been expecting the EP to recommend

ablation so soon, so I wasn¹t prepared to ask any questions about his approach

or track record. (He

mentioned an 80% success rate, the risks of surgery, and the possibility

that it won¹t make me feel any better.) In fact, I am rather flummoxed. I

have heard so much about Dr. Natale on this board, but how can I tell my EP

that I would rather have an ablation done by someone with more recognition?

(I¹m not sure that it¹s even fair to do so.) ...snip... I have mixed feelings

about the recommendation for ablation. I wonder if my EP gave up on drug

therapy too soon, yet I don¹t seem to do well on the drugs I¹ve been on.

Magnesium makes me sick and Diltiazem and Dofetilde make me feel tired and

light-headed. Doing anything feels like a big effort. I don¹t know whether

it¹s the drugs or the afib that causes this. (Or maybe depression.) ...snip...

I¹m

feeling tired, discouraged and scared. I¹ve lost interest in just about

everything that I ever liked to do. I¹m so tired of being tired.

Bill Manson

" When [] put on a uniform, something happened to him. He turned

into Manson's cousin, Manson. " -- Ken Kaiser

[Guest guest]

As always, your milleage may vary, but here is where I'm coming from. I've

talked sometimes about the three kinds of AFibbers. The first tries to find

relief through 'natural means' -- avoiding triggers, adjusting diet, adjusting

posture and so on. The second tries to medicate the condition. The third wants

a mechanical solution. All three want solutions, but they develop different

mindsets.

I didn't ever have much patience for the natural route. When there's as much

ambiguity as there is with this condition, those solutions all felt like

thrashing about. I've spent five years on the medical route. The dread

amiodarone (in combination with toporol) is the only thing that has any effect

on me and that effect is tenuous. The probability and nastiness of the side

effects that go with that regimen -- and the fact that it only partly resolves

the problem -- has been enough to move me firmly into the ranks of the

mechanics. ly, it sounds like you're being pulled there, kicking and

screaming.

I found it hard to wrap my head around two concepts as I got there. First, as

we all know --it's our mantra-- " Fib won't kill you. " So why am I going to let

somebody poke around in my heart? Part of it refers to the second concept, but

an even bigger part refers to the unspoken part of the mantra. " It won't kill

you, but there are times when you aren't sure that's a good thing. " Being sick

and tired of being sick and tired is a very good motivation to do something

about it. The second concept is that ablation takes place in your heart, but it

isn't 'heart surgery' as we subjectively relate to that term. It's not like a

bypass. You're not opened up. They're not spreading ribs. I could accept that

intellectually, but I needed to accept it in my gut before I was ready to move

into mechanic mode. I've done that, and now I'm waiting for my turn on the

table.

Now comes the heresy. Dr. Natale is a very successful electrophysiologist. And

he's doing a tremendous job in bringing attention to this condition and its

treatments. He appears to be very very good. But, in my opinion, he's even

better at something else than he is at medicine. He is a great marketer. The

whole Cleveland Clinic has done a masterful job of marketing. Let me emphasize

--- THIS IS NOT A BAD THING. Both in terms of education and of results, they've

made it work. I think that there's a real danger in saying that there are three

first rate ablators -- two in Europe and Dr. Natale -- and going to anyone else

is settling for second best. Find out about your local person's success rate.

If you can, talk to some folks who have used him. His success rate sounds

similar to that of most EPs. I'd say go with what you're comfortable with, but

don't let your comfort level be dictated by websites or bedside manor.

Good luck, and as I said at the top, this is just my $.02.

Kathleen Stept wrote:

He said that I am a candidate for ablation

at this point, since the drugs that have been tried haven¹t much affected my

afib and they produce side effects. ...snip...I was not ready on Friday to make

a decision to schedule an ablation. I hadn¹t been expecting the EP to recommend

ablation so soon, so I wasn¹t prepared to ask any questions about his approach

or track record. (He

mentioned an 80% success rate, the risks of surgery, and the possibility

that it won¹t make me feel any better.) In fact, I am rather flummoxed. I

have heard so much about Dr. Natale on this board, but how can I tell my EP

that I would rather have an ablation done by someone with more recognition?

(I¹m not sure that it¹s even fair to do so.) ...snip... I have mixed feelings

about the recommendation for ablation. I wonder if my EP gave up on drug

therapy too soon, yet I don¹t seem to do well on the drugs I¹ve been on.

Magnesium makes me sick and Diltiazem and Dofetilde make me feel tired and

light-headed. Doing anything feels like a big effort. I don¹t know whether

it¹s the drugs or the afib that causes this. (Or maybe depression.) ...snip...

I¹m

feeling tired, discouraged and scared. I¹ve lost interest in just about

everything that I ever liked to do. I¹m so tired of being tired.

Bill Manson

" When [] put on a uniform, something happened to him. He turned

into Manson's cousin, Manson. " -- Ken Kaiser

[Guest guest]

Bill, your reply was like a great movie: " I laughed, I cried " when I read

it. Thanks ever so much for sharing your thoughts and experience. I loved

what you said about being pulled into the ranks of the mechanics, kicking

and screaming. So true. From what I have been able to find out about my

doc, he is very good and very current with latest developments. Again,

thank you for your help. Kathleen Stept

> As always, your milleage may vary, but here is where I'm coming from. I've

> talked sometimes about the three kinds of AFibbers. The first tries to find

> relief through 'natural means' -- avoiding triggers, adjusting diet, adjusting

> posture and so on. The second tries to medicate the condition. The third

> wants a mechanical solution. All three want solutions, but they develop

> different mindsets.

>

> I didn't ever have much patience for the natural route. When there's as much

> ambiguity as there is with this condition, those solutions all felt like

> thrashing about. I've spent five years on the medical route. The dread

> amiodarone (in combination with toporol) is the only thing that has any effect

> on me and that effect is tenuous. The probability and nastiness of the side

> effects that go with that regimen -- and the fact that it only partly resolves

> the problem -- has been enough to move me firmly into the ranks of the

> mechanics. ly, it sounds like you're being pulled there, kicking and

> screaming.

>

> I found it hard to wrap my head around two concepts as I got there. First, as

> we all know --it's our mantra-- " Fib won't kill you. " So why am I going to

> let somebody poke around in my heart? Part of it refers to the second

> concept, but an even bigger part refers to the unspoken part of the mantra.

> " It won't kill you, but there are times when you aren't sure that's a good

> thing. " Being sick and tired of being sick and tired is a very good

> motivation to do something about it. The second concept is that ablation

> takes place in your heart, but it isn't 'heart surgery' as we subjectively

> relate to that term. It's not like a bypass. You're not opened up. They're

> not spreading ribs. I could accept that intellectually, but I needed to

> accept it in my gut before I was ready to move into mechanic mode. I've done

> that, and now I'm waiting for my turn on the table.

>

> Now comes the heresy. Dr. Natale is a very successful electrophysiologist.

> And he's doing a tremendous job in bringing attention to this condition and

> its treatments. He appears to be very very good. But, in my opinion, he's

> even better at something else than he is at medicine. He is a great marketer.

> The whole Cleveland Clinic has done a masterful job of marketing. Let me

> emphasize --- THIS IS NOT A BAD THING. Both in terms of education and of

> results, they've made it work. I think that there's a real danger in saying

> that there are three first rate ablators -- two in Europe and Dr. Natale --

> and going to anyone else is settling for second best. Find out about your

> local person's success rate. If you can, talk to some folks who have used

> him. His success rate sounds similar to that of most EPs. I'd say go with

> what you're comfortable with, but don't let your comfort level be dictated by

> websites or bedside manor.

>

> Good luck, and as I said at the top, this is just my $.02.

>

> Kathleen Stept wrote:

> He said that I am a candidate for ablation

> at this point, since the drugs that have been tried haven¹t much affected my

> afib and they produce side effects. ...snip...I was not ready on Friday to

> make a decision to schedule an ablation. I hadn¹t been expecting the EP to

> recommend ablation so soon, so I wasn¹t prepared to ask any questions about

> his approach or track record. (He

> mentioned an 80% success rate, the risks of surgery, and the possibility

> that it won¹t make me feel any better.) In fact, I am rather flummoxed. I

> have heard so much about Dr. Natale on this board, but how can I tell my EP

> that I would rather have an ablation done by someone with more recognition?

> (I¹m not sure that it¹s even fair to do so.) ...snip... I have mixed feelings

> about the recommendation for ablation. I wonder if my EP gave up on drug

> therapy too soon, yet I don¹t seem to do well on the drugs I¹ve been on.

> Magnesium makes me sick and Diltiazem and Dofetilde make me feel tired and

> light-headed. Doing anything feels like a big effort. I don¹t know whether

> it¹s the drugs or the afib that causes this. (Or maybe depression.)

> ...snip... I¹m

> feeling tired, discouraged and scared. I¹ve lost interest in just about

> everything that I ever liked to do. I¹m so tired of being tired.

>

>

> Bill Manson

>

> " When [] put on a uniform, something happened to him. He turned

> into Manson's cousin, Manson. " -- Ken Kaiser

>

[Guest guest]

Bill, your reply was like a great movie: " I laughed, I cried " when I read

it. Thanks ever so much for sharing your thoughts and experience. I loved

what you said about being pulled into the ranks of the mechanics, kicking

and screaming. So true. From what I have been able to find out about my

doc, he is very good and very current with latest developments. Again,

thank you for your help. Kathleen Stept

> As always, your milleage may vary, but here is where I'm coming from. I've

> talked sometimes about the three kinds of AFibbers. The first tries to find

> relief through 'natural means' -- avoiding triggers, adjusting diet, adjusting

> posture and so on. The second tries to medicate the condition. The third

> wants a mechanical solution. All three want solutions, but they develop

> different mindsets.

>

> I didn't ever have much patience for the natural route. When there's as much

> ambiguity as there is with this condition, those solutions all felt like

> thrashing about. I've spent five years on the medical route. The dread

> amiodarone (in combination with toporol) is the only thing that has any effect

> on me and that effect is tenuous. The probability and nastiness of the side

> effects that go with that regimen -- and the fact that it only partly resolves

> the problem -- has been enough to move me firmly into the ranks of the

> mechanics. ly, it sounds like you're being pulled there, kicking and

> screaming.

>

> I found it hard to wrap my head around two concepts as I got there. First, as

> we all know --it's our mantra-- " Fib won't kill you. " So why am I going to

> let somebody poke around in my heart? Part of it refers to the second

> concept, but an even bigger part refers to the unspoken part of the mantra.

> " It won't kill you, but there are times when you aren't sure that's a good

> thing. " Being sick and tired of being sick and tired is a very good

> motivation to do something about it. The second concept is that ablation

> takes place in your heart, but it isn't 'heart surgery' as we subjectively

> relate to that term. It's not like a bypass. You're not opened up. They're

> not spreading ribs. I could accept that intellectually, but I needed to

> accept it in my gut before I was ready to move into mechanic mode. I've done

> that, and now I'm waiting for my turn on the table.

>

> Now comes the heresy. Dr. Natale is a very successful electrophysiologist.

> And he's doing a tremendous job in bringing attention to this condition and

> its treatments. He appears to be very very good. But, in my opinion, he's

> even better at something else than he is at medicine. He is a great marketer.

> The whole Cleveland Clinic has done a masterful job of marketing. Let me

> emphasize --- THIS IS NOT A BAD THING. Both in terms of education and of

> results, they've made it work. I think that there's a real danger in saying

> that there are three first rate ablators -- two in Europe and Dr. Natale --

> and going to anyone else is settling for second best. Find out about your

> local person's success rate. If you can, talk to some folks who have used

> him. His success rate sounds similar to that of most EPs. I'd say go with

> what you're comfortable with, but don't let your comfort level be dictated by

> websites or bedside manor.

>

> Good luck, and as I said at the top, this is just my $.02.

>

> Kathleen Stept wrote:

> He said that I am a candidate for ablation

> at this point, since the drugs that have been tried haven¹t much affected my

> afib and they produce side effects. ...snip...I was not ready on Friday to

> make a decision to schedule an ablation. I hadn¹t been expecting the EP to

> recommend ablation so soon, so I wasn¹t prepared to ask any questions about

> his approach or track record. (He

> mentioned an 80% success rate, the risks of surgery, and the possibility

> that it won¹t make me feel any better.) In fact, I am rather flummoxed. I

> have heard so much about Dr. Natale on this board, but how can I tell my EP

> that I would rather have an ablation done by someone with more recognition?

> (I¹m not sure that it¹s even fair to do so.) ...snip... I have mixed feelings

> about the recommendation for ablation. I wonder if my EP gave up on drug

> therapy too soon, yet I don¹t seem to do well on the drugs I¹ve been on.

> Magnesium makes me sick and Diltiazem and Dofetilde make me feel tired and

> light-headed. Doing anything feels like a big effort. I don¹t know whether

> it¹s the drugs or the afib that causes this. (Or maybe depression.)

> ...snip... I¹m

> feeling tired, discouraged and scared. I¹ve lost interest in just about

> everything that I ever liked to do. I¹m so tired of being tired.

>

>

> Bill Manson

>

> " When [] put on a uniform, something happened to him. He turned

> into Manson's cousin, Manson. " -- Ken Kaiser

>

[Guest guest]

Bill, your reply was like a great movie: " I laughed, I cried " when I read

it. Thanks ever so much for sharing your thoughts and experience. I loved

what you said about being pulled into the ranks of the mechanics, kicking

and screaming. So true. From what I have been able to find out about my

doc, he is very good and very current with latest developments. Again,

thank you for your help. Kathleen Stept

> As always, your milleage may vary, but here is where I'm coming from. I've

> talked sometimes about the three kinds of AFibbers. The first tries to find

> relief through 'natural means' -- avoiding triggers, adjusting diet, adjusting

> posture and so on. The second tries to medicate the condition. The third

> wants a mechanical solution. All three want solutions, but they develop

> different mindsets.

>

> I didn't ever have much patience for the natural route. When there's as much

> ambiguity as there is with this condition, those solutions all felt like

> thrashing about. I've spent five years on the medical route. The dread

> amiodarone (in combination with toporol) is the only thing that has any effect

> on me and that effect is tenuous. The probability and nastiness of the side

> effects that go with that regimen -- and the fact that it only partly resolves

> the problem -- has been enough to move me firmly into the ranks of the

> mechanics. ly, it sounds like you're being pulled there, kicking and

> screaming.

>

> I found it hard to wrap my head around two concepts as I got there. First, as

> we all know --it's our mantra-- " Fib won't kill you. " So why am I going to

> let somebody poke around in my heart? Part of it refers to the second

> concept, but an even bigger part refers to the unspoken part of the mantra.

> " It won't kill you, but there are times when you aren't sure that's a good

> thing. " Being sick and tired of being sick and tired is a very good

> motivation to do something about it. The second concept is that ablation

> takes place in your heart, but it isn't 'heart surgery' as we subjectively

> relate to that term. It's not like a bypass. You're not opened up. They're

> not spreading ribs. I could accept that intellectually, but I needed to

> accept it in my gut before I was ready to move into mechanic mode. I've done

> that, and now I'm waiting for my turn on the table.

>

> Now comes the heresy. Dr. Natale is a very successful electrophysiologist.

> And he's doing a tremendous job in bringing attention to this condition and

> its treatments. He appears to be very very good. But, in my opinion, he's

> even better at something else than he is at medicine. He is a great marketer.

> The whole Cleveland Clinic has done a masterful job of marketing. Let me

> emphasize --- THIS IS NOT A BAD THING. Both in terms of education and of

> results, they've made it work. I think that there's a real danger in saying

> that there are three first rate ablators -- two in Europe and Dr. Natale --

> and going to anyone else is settling for second best. Find out about your

> local person's success rate. If you can, talk to some folks who have used

> him. His success rate sounds similar to that of most EPs. I'd say go with

> what you're comfortable with, but don't let your comfort level be dictated by

> websites or bedside manor.

>

> Good luck, and as I said at the top, this is just my $.02.

>

> Kathleen Stept wrote:

> He said that I am a candidate for ablation

> at this point, since the drugs that have been tried haven¹t much affected my

> afib and they produce side effects. ...snip...I was not ready on Friday to

> make a decision to schedule an ablation. I hadn¹t been expecting the EP to

> recommend ablation so soon, so I wasn¹t prepared to ask any questions about

> his approach or track record. (He

> mentioned an 80% success rate, the risks of surgery, and the possibility

> that it won¹t make me feel any better.) In fact, I am rather flummoxed. I

> have heard so much about Dr. Natale on this board, but how can I tell my EP

> that I would rather have an ablation done by someone with more recognition?

> (I¹m not sure that it¹s even fair to do so.) ...snip... I have mixed feelings

> about the recommendation for ablation. I wonder if my EP gave up on drug

> therapy too soon, yet I don¹t seem to do well on the drugs I¹ve been on.

> Magnesium makes me sick and Diltiazem and Dofetilde make me feel tired and

> light-headed. Doing anything feels like a big effort. I don¹t know whether

> it¹s the drugs or the afib that causes this. (Or maybe depression.)

> ...snip... I¹m

> feeling tired, discouraged and scared. I¹ve lost interest in just about

> everything that I ever liked to do. I¹m so tired of being tired.

>

>

> Bill Manson

>

> " When [] put on a uniform, something happened to him. He turned

> into Manson's cousin, Manson. " -- Ken Kaiser

>

[Guest guest]

Bill:

With regard to your thoughtful note which in part reads (see below) I'd

like to make several comments if I may. Here, just so we are all playing on

the same field, is what I think one essential part is

" Now comes the heresy. Dr. Natale is a very successful

electrophysiologist. And he's doing a tremendous job in bringing attention

to this condition and its treatments. He appears to be very very

good. But, in my opinion, he's even better at something else than he is at

medicine. He is a great marketer. The whole Cleveland Clinic has done a

masterful job of marketing. Let me emphasize --- THIS IS NOT A BAD

THING. Both in terms of education and of results, they've made it work. I

think that there's a real danger in saying that there are three first rate

ablators -- two in Europe and Dr. Natale -- and going to anyone else is

settling for second best. Find out about your local person's success

rate. If you can, talk to some folks who have used him. His success rate

sounds similar to that of most EPs. I'd say go with what you're

comfortable with, but don't let your comfort level be dictated by websites

or bedside manor [sic]. "

It may well be that those doing ablations NOW are catching up and are

learning their craft. Good. But let me point out several factors which have

nothing to do with the Cleveland Clinc's or Dr. Natale's marketing skills.

I had afib for almost two years before I found this list. (I had

had all the medications and they had done noting but contribute to my

physical and psychological deterioration. I found this list and " lurked "

for one full month before it before it became apparent that the doctor " of

choice " in the US was Dr. Natale and the hospital, the Cleveland Clinic. I

am a fairly good investigator, and I checked out through other sources what

I found here. Then I checked with my own cardiologist. And yes, he agreed

(2002) Cleveland/Natale was the best place. (In fact my cardiologist has

one patient who will be going to Cleveland/Natale and the other at Loyola

University, Chicago.)

While the website played absolutely no role in my decision making, other

than provide me with sound information. I must say that the " bedside manor "

[sic] of each and every one of the people associated with Cleveland Clinic

were astonishingly supurb (and believe me, I'm a " critic " by profession and

I have never used " astonishingly supurb " in association with any hospital

I've had occasion to encounter (for a wide variety of reasons -- friends,

family, etc.) Bedside manner plays a highly important role. If Natale had

the finest bedside manner in the world, but the people around him, in his

office, or in other parts of the hospital, were duds or bored or

incompetent or uninterested etc. etc. I would have been the first to read

Dr. Natale the riot act. But the exact opposite was true, from Michell and

Minerva in Dr. N's office, to the folks in the pacemaker clinic, to the

people who stood by my bedside as I had to remain still -- and bitched like

crazy about it -- each person treated me like a worth human being.

I will say this about the Cleveland Clinic. If I have (goddess forbid) any

other serious condition, you can be damn sure I'll be heading to Cleveland

for the doctors -- and the bedside manner.

Lew Koch

[Guest guest]

Bill:

With regard to your thoughtful note which in part reads (see below) I'd

like to make several comments if I may. Here, just so we are all playing on

the same field, is what I think one essential part is

" Now comes the heresy. Dr. Natale is a very successful

electrophysiologist. And he's doing a tremendous job in bringing attention

to this condition and its treatments. He appears to be very very

good. But, in my opinion, he's even better at something else than he is at

medicine. He is a great marketer. The whole Cleveland Clinic has done a

masterful job of marketing. Let me emphasize --- THIS IS NOT A BAD

THING. Both in terms of education and of results, they've made it work. I

think that there's a real danger in saying that there are three first rate

ablators -- two in Europe and Dr. Natale -- and going to anyone else is

settling for second best. Find out about your local person's success

rate. If you can, talk to some folks who have used him. His success rate

sounds similar to that of most EPs. I'd say go with what you're

comfortable with, but don't let your comfort level be dictated by websites

or bedside manor [sic]. "

It may well be that those doing ablations NOW are catching up and are

learning their craft. Good. But let me point out several factors which have

nothing to do with the Cleveland Clinc's or Dr. Natale's marketing skills.

I had afib for almost two years before I found this list. (I had

had all the medications and they had done noting but contribute to my

physical and psychological deterioration. I found this list and " lurked "

for one full month before it before it became apparent that the doctor " of

choice " in the US was Dr. Natale and the hospital, the Cleveland Clinic. I

am a fairly good investigator, and I checked out through other sources what

I found here. Then I checked with my own cardiologist. And yes, he agreed

(2002) Cleveland/Natale was the best place. (In fact my cardiologist has

one patient who will be going to Cleveland/Natale and the other at Loyola

University, Chicago.)

While the website played absolutely no role in my decision making, other

than provide me with sound information. I must say that the " bedside manor "

[sic] of each and every one of the people associated with Cleveland Clinic

were astonishingly supurb (and believe me, I'm a " critic " by profession and

I have never used " astonishingly supurb " in association with any hospital

I've had occasion to encounter (for a wide variety of reasons -- friends,

family, etc.) Bedside manner plays a highly important role. If Natale had

the finest bedside manner in the world, but the people around him, in his

office, or in other parts of the hospital, were duds or bored or

incompetent or uninterested etc. etc. I would have been the first to read

Dr. Natale the riot act. But the exact opposite was true, from Michell and

Minerva in Dr. N's office, to the folks in the pacemaker clinic, to the

people who stood by my bedside as I had to remain still -- and bitched like

crazy about it -- each person treated me like a worth human being.

I will say this about the Cleveland Clinic. If I have (goddess forbid) any

other serious condition, you can be damn sure I'll be heading to Cleveland

for the doctors -- and the bedside manner.

Lew Koch

[Guest guest]

I had an abation done in April and so far have had complete success.

The choice was easy for me. (age 35) Spend the rest of my life on

Medicine with various side effects or trust the skill of a very

qualified EP and go for a CURE. 80% chance of a cure beats the heck

out of 100% chance of dealing and treating your afib for the rest of

your life.

> I saw my EP on Friday. I showed him a log of AF episodes in the

last month,

> which showed that that Dofetilide has not reduced my afib by much

if at all.

> (Alas, I didn¹t keep a log prior to being put on Dofetilide, so that

> judgment is subjective.) I asked about increasing the dose, but he

did not

> think it wise based on my EKGs. He said that I am a candidate for

ablation

> at this point, since the drugs that have been tried haven¹t much

affected my

> afib and they produce side effects. (I have been on Toprol in

addition to

> what I am on now.) Based on my month-long log, my episodes occur

several

> times a week and average 19.5 hours. They range from 35.5 to 1.5

hours. I

> recently started running (just enough to get my heart rate up) to

stop my

> afib, since I seem to go back into rhythm while cooling down.

Sometimes,

> though, I am just too tired to run.

>

> I was not ready on Friday to make a decision to schedule an

ablation. I

> hadn¹t been expecting the EP to recommend ablation so soon, so I

wasn¹t

> prepared to ask any questions about his approach or track record.

(He

> mentioned an 80% success rate, the risks of surgery, and the

possibility

> that it won¹t make me feel any better.) In fact, I am rather

flummoxed. I

> have heard so much about Dr. Natale on this board, but how can I

tell my EP

> that I would rather have an ablation done by someone with more

recognition?

> (I¹m not sure that it¹s even fair to do so.) I have found

resources that

> suggest what questions to ask, and suppose I can start there, but

what if

> the answers aren¹t what I¹m looking for? I¹m not sure how to tell

him that

> I¹d rather find another doctor. And of course, he may be the best

EP in the

> world, but how would know?

>

> I have mixed feelings about the recommendation for ablation. I

wonder if my

> EP gave up on drug therapy too soon, yet I don¹t seem to do well on

the

> drugs I¹ve been on. Magnesium makes me sick and Diltiazem and

Dofetilde make

> me feel tired and light-headed. Doing anything feels like a big

effort. I

> don¹t know whether it¹s the drugs or the afib that causes this.

(Or maybe

> depression.) I do know, however, that I had a really good day

before going

> on Dofetilide. I didn¹t have afib and I felt a lot more energetic

than I

> feel nowadays when I don¹t have afib. I noticed the problems even

before I

> left the hospital where I was put on Dofetilide‹I already felt

light-headed

> and sluggish. So many people have been helped by Dofetilide. Are my

> expectations too high?

>

> I¹m scheduled for another follow-up in 3 months. In the meantime,

he said

> that if I wanted to read up on and try out a gluten-free diet,

which has

> helped a couple of his patients, I can do so. I don¹t have

confidence that

> a gluten-free diet will help and don¹t feel much enthusiasm for

making all

> the adjustments required. I apologize for going on and on here.

I¹m

> feeling tired, discouraged and scared. I¹ve lost interest in just

about

> everything that I ever liked to do. I¹m so tired of being tired.

> --

> Kathleen Stept (Dofetilide 250mcg bid, Diltiazem 120 mg, Coumadin

5mg, baby

> aspirin), , Mississippi

>

>

>

>

>

>

>

>

[Guest guest]

Good catch, Lew, on the 'bedside manor'. Spell check makes for lazy

proofreading. That's almost as annoying as 'to the manner born.'

I hope that I was clear in not trying to denigrate Dr. Natale and his team, but

was simply trying to leave the door open for other options to provide the

service. (Am I taken with Natale's competency and charisma? Well, I describe

the place that I'm going to for my ablation as 'the place where Dr. Natale did

his EP residency').

The question of bedside manner is an interesting one. I demand competence, but

I'm less concerned with the warm and fuzzy sort of caring. The commitment to

excellence sort of caring is a requirement, of course. I really don't care if

the doctor is a pain to deal with as long as he gets the job done right. (I

feel the same way about the plumber who comes to my house.) But, then, I once

had a dentist who was known to his patients as " Old Ironhands. "

Bill Manson

" When [] put on a uniform, something happened to him. He turned

into Manson's cousin, Manson. " -- Ken Kaiser

[Guest guest]

Good catch, Lew, on the 'bedside manor'. Spell check makes for lazy

proofreading. That's almost as annoying as 'to the manner born.'

I hope that I was clear in not trying to denigrate Dr. Natale and his team, but

was simply trying to leave the door open for other options to provide the

service. (Am I taken with Natale's competency and charisma? Well, I describe

the place that I'm going to for my ablation as 'the place where Dr. Natale did

his EP residency').

The question of bedside manner is an interesting one. I demand competence, but

I'm less concerned with the warm and fuzzy sort of caring. The commitment to

excellence sort of caring is a requirement, of course. I really don't care if

the doctor is a pain to deal with as long as he gets the job done right. (I

feel the same way about the plumber who comes to my house.) But, then, I once

had a dentist who was known to his patients as " Old Ironhands. "

Bill Manson

" When [] put on a uniform, something happened to him. He turned

into Manson's cousin, Manson. " -- Ken Kaiser

[Guest guest]

Good catch, Lew, on the 'bedside manor'. Spell check makes for lazy

proofreading. That's almost as annoying as 'to the manner born.'

I hope that I was clear in not trying to denigrate Dr. Natale and his team, but

was simply trying to leave the door open for other options to provide the

service. (Am I taken with Natale's competency and charisma? Well, I describe

the place that I'm going to for my ablation as 'the place where Dr. Natale did

his EP residency').

The question of bedside manner is an interesting one. I demand competence, but

I'm less concerned with the warm and fuzzy sort of caring. The commitment to

excellence sort of caring is a requirement, of course. I really don't care if

the doctor is a pain to deal with as long as he gets the job done right. (I

feel the same way about the plumber who comes to my house.) But, then, I once

had a dentist who was known to his patients as " Old Ironhands. "

Bill Manson

" When [] put on a uniform, something happened to him. He turned

into Manson's cousin, Manson. " -- Ken Kaiser

[Guest guest]

Kathleen wrote:

<<how can I tell my EP that I would rather have an ablation done by

someone with more recognition>>

Tough situation. I'd say " more procedures " rather than " more recognition " .

<<I recently started running (just enough to get my heart rate up) to

stop my afib, since I seem to go back into rhythm while cooling down>>

I often return to NSR during the cool down too. When I was more

symptomatic, exercising seemed like the WRONG thing to do, but whenever

I tried it, it had a high rate of success in conversion to NSR. If you

have a treadmill, you might try setting the incline progressively higher

and higher as an alternative to outright running. The gradual increase

in intensity is easier to accommodate than starting out at a run.

We are in a difficult time of transition. A news item just posted today

said a study at Northwestern involving 8,000 people over the last 30

years suggests that 1/4 (25%) of all people now over 40 will develop

afib. In fact, the rate of occurrence has probably been this high all

along. It was just not understood very well. My mother, a registered

nurse who worked for a cardiologist in the 40s and an internist in the

60s and 70s, said neither doctor ever mentioned afib. I think they saw

the odd pattern and called it palps or something. My point is that now,

given the recognition of the problem, there will be better and better

solutions.

So the question for you is how long do you want to sweat it out? I don't

think a year of waiting will alter the choices much. 10 years, on the

other hand, probably will.

On the other hand, you never tried Rythmol, Tambacor, or Betapace. Might

be worth a try, even though they are considered less effective. Betapace

would perhaps eliminate the need for Toprol (the " beta " stands for " beta

blocker " ).

- OU alum in MI

[Guest guest]

Kathleen wrote:

<<how can I tell my EP that I would rather have an ablation done by

someone with more recognition>>

Tough situation. I'd say " more procedures " rather than " more recognition " .

<<I recently started running (just enough to get my heart rate up) to

stop my afib, since I seem to go back into rhythm while cooling down>>

I often return to NSR during the cool down too. When I was more

symptomatic, exercising seemed like the WRONG thing to do, but whenever

I tried it, it had a high rate of success in conversion to NSR. If you

have a treadmill, you might try setting the incline progressively higher

and higher as an alternative to outright running. The gradual increase

in intensity is easier to accommodate than starting out at a run.

We are in a difficult time of transition. A news item just posted today

said a study at Northwestern involving 8,000 people over the last 30

years suggests that 1/4 (25%) of all people now over 40 will develop

afib. In fact, the rate of occurrence has probably been this high all

along. It was just not understood very well. My mother, a registered

nurse who worked for a cardiologist in the 40s and an internist in the

60s and 70s, said neither doctor ever mentioned afib. I think they saw

the odd pattern and called it palps or something. My point is that now,

given the recognition of the problem, there will be better and better

solutions.

So the question for you is how long do you want to sweat it out? I don't

think a year of waiting will alter the choices much. 10 years, on the

other hand, probably will.

On the other hand, you never tried Rythmol, Tambacor, or Betapace. Might

be worth a try, even though they are considered less effective. Betapace

would perhaps eliminate the need for Toprol (the " beta " stands for " beta

blocker " ).

- OU alum in MI

[Guest guest]

Hi Rich! Just what I needed to hear! I felt totally clueless as to how to

approach this. The approach you suggest makes perfect sense. Thanks for

your help. One couldn¹t ask for more practical assistance in navigating the

shoals of afib treatment! Kath.

> In a message dated 8/16/04 10:22:05 AM Eastern Daylight Time,

> kstept@... writes:

>

>> > I¹ve lost interest in just about

>> > everything that I ever liked to do. I¹m so tired of being tired.

>> >

>

> Kathy,

> Here's a good way to bring your EP into the running and to also let him down

> regarding ablations.

> First, let him know you are a member of this group. Our size and scope of

> information as well.

> That you have direct access to Dr. Natale at the Cleveland Clinic. The most

> accopmplished

> EP in AF ablations and research and several others.

> Here's where you have to seperate yourself from your emotions and sense of

> fair play.

> The only person who's going to put wires and probes into my heart, is the

> best I can find.

> Dr. Natale is one for sure. What does your EP bring to the plate? Ask him.

> What can you do that Dr. Natale can't do? Are you as accomplished as Dr.

> Natale?

> Make him work for you. If he doesn't pass the test. Go elsewhere. Keep us

> informed.

> Rich O

>

>

>

[Guest guest]

Hi Rich! Just what I needed to hear! I felt totally clueless as to how to

approach this. The approach you suggest makes perfect sense. Thanks for

your help. One couldn¹t ask for more practical assistance in navigating the

shoals of afib treatment! Kath.

> In a message dated 8/16/04 10:22:05 AM Eastern Daylight Time,

> kstept@... writes:

>

>> > I¹ve lost interest in just about

>> > everything that I ever liked to do. I¹m so tired of being tired.

>> >

>

> Kathy,

> Here's a good way to bring your EP into the running and to also let him down

> regarding ablations.

> First, let him know you are a member of this group. Our size and scope of

> information as well.

> That you have direct access to Dr. Natale at the Cleveland Clinic. The most

> accopmplished

> EP in AF ablations and research and several others.

> Here's where you have to seperate yourself from your emotions and sense of

> fair play.

> The only person who's going to put wires and probes into my heart, is the

> best I can find.

> Dr. Natale is one for sure. What does your EP bring to the plate? Ask him.

> What can you do that Dr. Natale can't do? Are you as accomplished as Dr.

> Natale?

> Make him work for you. If he doesn't pass the test. Go elsewhere. Keep us

> informed.

> Rich O

>

>

>

[Guest guest]

Hi Rich! Just what I needed to hear! I felt totally clueless as to how to

approach this. The approach you suggest makes perfect sense. Thanks for

your help. One couldn¹t ask for more practical assistance in navigating the

shoals of afib treatment! Kath.

> In a message dated 8/16/04 10:22:05 AM Eastern Daylight Time,

> kstept@... writes:

>

>> > I¹ve lost interest in just about

>> > everything that I ever liked to do. I¹m so tired of being tired.

>> >

>

> Kathy,

> Here's a good way to bring your EP into the running and to also let him down

> regarding ablations.

> First, let him know you are a member of this group. Our size and scope of

> information as well.

> That you have direct access to Dr. Natale at the Cleveland Clinic. The most

> accopmplished

> EP in AF ablations and research and several others.

> Here's where you have to seperate yourself from your emotions and sense of

> fair play.

> The only person who's going to put wires and probes into my heart, is the

> best I can find.

> Dr. Natale is one for sure. What does your EP bring to the plate? Ask him.

> What can you do that Dr. Natale can't do? Are you as accomplished as Dr.

> Natale?

> Make him work for you. If he doesn't pass the test. Go elsewhere. Keep us

> informed.

> Rich O

>

>

>

[Guest guest]

> First, let him know you ... have direct access to Dr. Natale at the

Cleveland Clinic. The most accopmplished EP in AF ablations and

research and several others.

=================================

Kathy had asked for help in telling her EP that she didn't want him

to do an ablation on her, I guess because she wasn't confident in

him. I know that lots of people swear by Dr. Natale as a

groundbreaker ablation specialist, and I know nothing of him

personally. However, in my first meeting with my EP I noted to him

that I read a lot of support groups and was aware of treatment plans,

meds and physicians, and mentioned Natale. His reaction was sharp

and quick ... that Natale was a bit too quick to ablate and that

there were others whose technique and preparation were better. I

told him that if/when I was an ablation candidate I wasn't sure I

wanted him (my EP) to be the surgeon since I knew nothing of his

skills, nor did I really know much about Natale. He said he

understood that view, and would help me get second/third opinions if

I wanted them. And he said to please talk to him if I thought I

wanted to visit Natale (I don't yet .. only mild AFib).

Again, I don't know Natale at all, and his reputation on the support

groups is certainly good. However, I would encourage asking several

EPs or other cardiologists what they thought of any doctor who was

going to tamper with one's heart.

Steve

[Guest guest]

> First, let him know you ... have direct access to Dr. Natale at the

Cleveland Clinic. The most accopmplished EP in AF ablations and

research and several others.

=================================

Kathy had asked for help in telling her EP that she didn't want him

to do an ablation on her, I guess because she wasn't confident in

him. I know that lots of people swear by Dr. Natale as a

groundbreaker ablation specialist, and I know nothing of him

personally. However, in my first meeting with my EP I noted to him

that I read a lot of support groups and was aware of treatment plans,

meds and physicians, and mentioned Natale. His reaction was sharp

and quick ... that Natale was a bit too quick to ablate and that

there were others whose technique and preparation were better. I

told him that if/when I was an ablation candidate I wasn't sure I

wanted him (my EP) to be the surgeon since I knew nothing of his

skills, nor did I really know much about Natale. He said he

understood that view, and would help me get second/third opinions if

I wanted them. And he said to please talk to him if I thought I

wanted to visit Natale (I don't yet .. only mild AFib).

Again, I don't know Natale at all, and his reputation on the support

groups is certainly good. However, I would encourage asking several

EPs or other cardiologists what they thought of any doctor who was

going to tamper with one's heart.

Steve

[Guest guest]

In a message dated 8/17/04 11:38:52 AM Eastern Daylight Time,

stevel227@... writes:

> that Natale was a bit too quick to ablate and that

> there were others whose technique and preparation were better

Steve, do me a favor. Ask your EP what his take on Dr. Pappone in Milan,

Italy and Dr. " H " in Bourdeaux, France is. Both Natale's equals as to quantity,

research, success rates and dedication to helping those with AF.

Some people make dust. others eat it.

Rich O